Why We Walk: Reflections
By Cao Anh Quan
Editor's note: The opinions expressed herein are those of the author exclusively.
By Cao Anh Quan
Editor's note: The opinions expressed herein are those of the author exclusively.
In Key Biscayne, a wingspan from Calle Ocho and South Beach, 12,000 walkers showed up and together we raised close to $500,000. Yesterday, on Flagler, in the heart of West Palm Beach, a skip and a jump from Worth Avenue, 3,000 walked and brought in close to $250,000. At first blush, we tend to be impressed with the numbers and statistics that underscore the story. The purpose of this short essay is reflective in nature and to answer my new friends, the young faces of the Autism Speaks staff, the converts to this new religion who asked me where I find the energy to do this every year at three walks (and the countless other planning events which lead to the Walks themselves). I could answer the question in the most Socratic of all ways and ask them to answer it themselves, but let me start this conversation with a few notes:
It started for me in Broward almost seven years ago in a park where Wendy Bellack, Diane Orr and I kept plugging the coffee makers into an outlet and blowing the fuse not just once, but three times. I guess at 5:30 AM, even after being awakened with a celestial shower of stars, we all just do the next thing on the checklist. I think we had 1500 people that year and we raised the huge sum of $120,000. It's where I first met Dan Marino and heard him talk about his gimpy knees and his foundation. It's also where I caught the Walk bug.
Yesterday and the day before and the day before that were no different. There always seems to be a plan, and then the pace and the sequence of the events just takes over: tents to set up, stages to build, entertainment centers and information booths to map out and situate, food to secure and pick up, refreshments to bring in, shirts to print up, and the days before the event and in the early dawn, banners to hang, ice chests to fill, directions to post, and last, but not least, safety factors to check out
And it's not just the staff. I cannot even begin to tell the stories of the countless families, volunteers, teachers, students, administrators, parents and grandparents who call in, who sign up on the web, who drive up and down and over. Some even took the bus. In Miami, Christian Williams, the young high school freshman who came to every single planning meeting, sometimes had to take two connecting buses to get there. I thought of another Christian, Bob and Suzanne's grandson and the banner that they hold proudly each time they walk for him. I thought of Daniel Rubenstein and Daniel Alexander Cao and how our boys changed our lives and how we continue to change theirs.
Why do I do this? The answer is complex, and yet, quite simple. As Suzanne Wright said on stage yesterday, sometimes it feels like we are being discriminated against because one of our children has autism. I have learned that my family will take care of me even if the world does not seem to care. And I intuited this profound truth at age 11, reading and translating the 3000 lives and manifestations of the Buddha from Sanskrit into Vietnamese, German and English. Sometimes, it is easier to walk away from the negativity of the world and the divisiveness of the situation and just reach out for the love. It's that simple: ability and disability are one and the same. So are normality and abnormality.
At every single walk, I walk and I smile because I feel that love. Not just because we raise money, not just because there is an organization that supports research and discovers new markers for people with autism, not because the disorder is sometimes so overwhelming that you can see a family torn apart when a child cries, not because we are on a crusade to change the way we look at each other's disability and run away and hide in pain. I find that when my brain stops the analysis and no longer obsesses with the cause and the solutions, my ability to see and to listen becomes much more acute. And my heart slows down to listen to what I usually ignore.
That's the first thing Daniel taught me: give him the space and time to reach out to me and connect. In that short flash, which seems forever, I learn to listen and hear my question again if I need to clarify and set another direction for our communication. It is not the question; it is the smile and the love behind the question. It is the acceptance for who Daniel is.
Professionals often talk about how they become jaded and their heart is hardened. Families do not have that choice. Neither do friends, like the circle of friends that makes up Autism Speaks. Like the circle of friends that Joanne Scaturro and Renee Whaley once started statewide with Family Network here in Florida.
I come every year because at every walk, I get recharged. In Broward that first year, I got recharged because I was close enough to Dan Marino to be able to get his signature on a T-shirt for Tim's family, and the grandfather of that young man, now in middle school, always reminds me of the momentous meaning of the signature on that shirt for his grandson. I come every year looking for a Mitzvah, a kind gesture, a smile, an understanding that therapists and professionals somehow overlook because the science teaches us to look only at the underlying negative numbers and the difference symptomatologically.
This year, at the Dade Walk I found it with two middle school students who brought me a coconut pastry and told me they had saved it for me because they knew I missed breakfast. Yesterday, in Palm Beach, it was the smile on the face of a Grandma in a wheelchair at the end of the day. She was at the side of the photo booth while her family was assembling their team for a group portrait. I wheeled her to the VIP booth and got her a drink of cold water and some respite for the both of us from the burning sun.
I also understand in the heat of the day that all of us thirst for more. We want to give more and we want more to be asked of us. The research becomes more meaningful when the application goes beyond the reach of professionals into the hands of the families and the people with autism. Just because we cannot hear their voice does not mean they do not have a voice. Whether we answer the question of developing more walks, more chapters, or more special events; whether we bring the mergers to fruition by blending very distinct and separate organizations; the one thing which every Walk has taught us is that each reality has a life, and each life connotes a series of relationships which need to be cherished and nurtured and brought to life. Once a year, that reality becomes real. What makes it real is the work we do all year long culminating in the Walk, and beyond that, gives the relationships between staff and volunteers, researchers and donors, politicians and community members the spirit of our motto: It's time to listen
People come and people go, but the cause which unites us remains. We check things off and write down more things in hope of checking them off further down the line. At the end of the day what counts is that recharged energy we find in our hearts, the spirit that imbues and motivates all of us, that makes us proud to know we each have been a part of this team.
Let's walk.
It started for me in Broward almost seven years ago in a park where Wendy Bellack, Diane Orr and I kept plugging the coffee makers into an outlet and blowing the fuse not just once, but three times. I guess at 5:30 AM, even after being awakened with a celestial shower of stars, we all just do the next thing on the checklist. I think we had 1500 people that year and we raised the huge sum of $120,000. It's where I first met Dan Marino and heard him talk about his gimpy knees and his foundation. It's also where I caught the Walk bug.
Yesterday and the day before and the day before that were no different. There always seems to be a plan, and then the pace and the sequence of the events just takes over: tents to set up, stages to build, entertainment centers and information booths to map out and situate, food to secure and pick up, refreshments to bring in, shirts to print up, and the days before the event and in the early dawn, banners to hang, ice chests to fill, directions to post, and last, but not least, safety factors to check out
And it's not just the staff. I cannot even begin to tell the stories of the countless families, volunteers, teachers, students, administrators, parents and grandparents who call in, who sign up on the web, who drive up and down and over. Some even took the bus. In Miami, Christian Williams, the young high school freshman who came to every single planning meeting, sometimes had to take two connecting buses to get there. I thought of another Christian, Bob and Suzanne's grandson and the banner that they hold proudly each time they walk for him. I thought of Daniel Rubenstein and Daniel Alexander Cao and how our boys changed our lives and how we continue to change theirs.
Why do I do this? The answer is complex, and yet, quite simple. As Suzanne Wright said on stage yesterday, sometimes it feels like we are being discriminated against because one of our children has autism. I have learned that my family will take care of me even if the world does not seem to care. And I intuited this profound truth at age 11, reading and translating the 3000 lives and manifestations of the Buddha from Sanskrit into Vietnamese, German and English. Sometimes, it is easier to walk away from the negativity of the world and the divisiveness of the situation and just reach out for the love. It's that simple: ability and disability are one and the same. So are normality and abnormality.
At every single walk, I walk and I smile because I feel that love. Not just because we raise money, not just because there is an organization that supports research and discovers new markers for people with autism, not because the disorder is sometimes so overwhelming that you can see a family torn apart when a child cries, not because we are on a crusade to change the way we look at each other's disability and run away and hide in pain. I find that when my brain stops the analysis and no longer obsesses with the cause and the solutions, my ability to see and to listen becomes much more acute. And my heart slows down to listen to what I usually ignore.
That's the first thing Daniel taught me: give him the space and time to reach out to me and connect. In that short flash, which seems forever, I learn to listen and hear my question again if I need to clarify and set another direction for our communication. It is not the question; it is the smile and the love behind the question. It is the acceptance for who Daniel is.
Professionals often talk about how they become jaded and their heart is hardened. Families do not have that choice. Neither do friends, like the circle of friends that makes up Autism Speaks. Like the circle of friends that Joanne Scaturro and Renee Whaley once started statewide with Family Network here in Florida.
I come every year because at every walk, I get recharged. In Broward that first year, I got recharged because I was close enough to Dan Marino to be able to get his signature on a T-shirt for Tim's family, and the grandfather of that young man, now in middle school, always reminds me of the momentous meaning of the signature on that shirt for his grandson. I come every year looking for a Mitzvah, a kind gesture, a smile, an understanding that therapists and professionals somehow overlook because the science teaches us to look only at the underlying negative numbers and the difference symptomatologically.
This year, at the Dade Walk I found it with two middle school students who brought me a coconut pastry and told me they had saved it for me because they knew I missed breakfast. Yesterday, in Palm Beach, it was the smile on the face of a Grandma in a wheelchair at the end of the day. She was at the side of the photo booth while her family was assembling their team for a group portrait. I wheeled her to the VIP booth and got her a drink of cold water and some respite for the both of us from the burning sun.
I also understand in the heat of the day that all of us thirst for more. We want to give more and we want more to be asked of us. The research becomes more meaningful when the application goes beyond the reach of professionals into the hands of the families and the people with autism. Just because we cannot hear their voice does not mean they do not have a voice. Whether we answer the question of developing more walks, more chapters, or more special events; whether we bring the mergers to fruition by blending very distinct and separate organizations; the one thing which every Walk has taught us is that each reality has a life, and each life connotes a series of relationships which need to be cherished and nurtured and brought to life. Once a year, that reality becomes real. What makes it real is the work we do all year long culminating in the Walk, and beyond that, gives the relationships between staff and volunteers, researchers and donors, politicians and community members the spirit of our motto: It's time to listen
People come and people go, but the cause which unites us remains. We check things off and write down more things in hope of checking them off further down the line. At the end of the day what counts is that recharged energy we find in our hearts, the spirit that imbues and motivates all of us, that makes us proud to know we each have been a part of this team.
Let's walk.
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